Over the last couple of months, all of our lives have changed in drastic ways. As COVID-19 has spread across the world, one can't help but become a bit obsessive about germs and think about them in an entirely new way. Efforts to curb the spread of this virus have led to changes in our thoughts, routines, and day to day lives. Because having Cystic Fibrosis makes Jonah high risk for developing serious complications from Coronavirus, I'm sure you can imagine our family has had to take the threat of it very seriously and we have certainly increased our vigilance.
As you have likely experienced a heightened level of concern and fear over germs recently, consider for a moment that this is what we have lived with every day for the 15 years of Jonah's life. Wondering what nasty virus or devastating bacteria may be lingering on a doorknob, a roller coaster seat belt, a dollar bill…these are normal thoughts for us. CF causes the mucus in Jonah's body to be incredibly thick and sticky, which is the perfect breeding ground for germs to flourish. Germs that can quickly wreak havoc in his lungs, causing a vicious cycle of inflammation, irritation, and infection, leading to permanent lung damage. As his parents, we have lived each day of Jonah's life with a fear of germs; it has been a difficult balance to not allow fear to rule us and for us to give Jonah the freedom to experience and enjoy life, while doing our best to protect him.
It is a struggle to be faced with the knowledge that Cystic Fibrosis is a progressive disease with no cure, to have to live with the expectation that Jonah's lung function will steadily decline over the years, to know that despite medical advances, the median age of survival for people with CF is still only in the early 40s. These fears and facts are always lurking…they are there as we sanitize piece after piece of medical equipment, as we ensure Jonah does 90 minutes of breathing treatments and takes 13 different medications every day, as we deal with prescription refills and insurance hassles, as we attend doctors' appointments, as we watch Jonah endure unpleasant tests and procedures, as we see him struggle with the frustrations that come with his daily fight against CF.
Since its founding in 1955, the Cystic Fibrosis Foundation has been dedicated to researching lifesaving therapies and medications for CF with the ultimate goal of finding a cure for all people living with this devastating disease. Thanks to the foundation's tireless efforts, we now have drugs and therapies that help fight some of the effects of CF and improve treatments and daily life. There are even drugs showing promise to reverse the basic defect and dramatically improve the health of many types of CF gene mutations, although unfortunately not the type of mutations Jonah has. We are excited about the progress that has been made, but we hope you agree, it is not enough.
Every year the Cystic Fibrosis Foundation sponsors Great Strides walks throughout the country, bringing people together to raise money and awareness of CF. Because only 30,000 people in the United States have CF, there is little to no government funding for research, so the success of the walks is crucial. We are disappointed that, due to the current situation, we are not able to gather in person this year for Great Strides. Yet, our family is still committed to raising money for Jonah's cure by supporting the CF Foundation's virtual Great Strides event this year. Since 2006, Team Jonah has raised nearly $340,000 for the CF Foundation!!! This year is different in many ways and we are not able to hold many of our typical fundraisers, yet we still hope to raise at least $10,000. This year, would you consider donating $15 in honor of the 15 years Jonah has fought CF? To make a secure online donation, simply click on the donate button above! Or you can write a check payable to "Cystic Fibrosis Foundation" and mail it to "Team Jonah P.O. Box 2751, Cypress, CA 90630." Donations are tax deductible and will be used to continue the CF Foundation's care programs and vital research. To simplify things this year, we invite all donations to funnel through our family's walker page. However, if you would like to register and set your own fundraising goal as in previous years, there is an option to join our team as a virtual walker as well.
We are disappointed we won't be gathering as a team in person this year. Walk day is always a highlight of our year and we will miss it! We greatly appreciate your continued help and support. Thank you for helping us change the meaning of the letters CF to Cure Found!
Rob, Marikka, Jonah, Javan and Ansley Ostermann